Dear Prof. McCallum,
Thank you for requesting the views of IDA to assist the working group preparing the
General Comment on Article 12.
It is incorrect to say that a person may have legal capacity but not “functional
capacity”. Functional testing for legal capacity constitutes disability-based
discrimination.
The right to legal capacity includes the capacity to act, i.e. the capacity to perform
legally regulated acts that give effect to one’s decisions, rather than only to be the
nominal subject of rights and obligations. It has already been established that the
capacity to act is not only part of the legal capacity guaranteed in Article 12, it is the
most defining part: the right to make decisions. While the capacity to act is subject
to legal regulation, such regulation cannot in any way discriminate based on
disability, such as by imposing “functional capacity” as a qualification for the right to
make one’s own decisions.
Disability as Functional Diversity
The CRPD guarantees to all persons with disabilities, i.e. people with a full range of
functional diversity in the physical, sensory, mental and intellectual dimensions,
equal enjoyment of all human rights and fundamental freedoms. Legal capacity is
both a substantive right, and a transversal principle conferring the power to
exercise all other rights by one’s own will. As such it is the most important right to
be protected from any limitations or exclusions based on disability.
Disability is characterized by “functional diversity,” so that even with the best
intentions not to discriminate, functional tests of competence in decision-making
will disproportionately if not exclusively impact persons with disabilities. It is not
possible to make functional testing for legal capacity “disability-neutral”.
Functional Capacity Test
Functional testing for legal capacity occurs when an assessment of functioning is
used to restrict legal capacity, to deprive a person of autonomy, or to impose
involuntary protective measures.
The “functional test” for legal capacity has been applied as follows:
A “functional test” of legal capacity (capacity to act) has been promoted in reform of
incapacity and guardianship laws, to move away from the automatic attribution of
incapacity to people who have certain kinds of disabilities. Under the “functional
test,” a person’s actual functioning with regard to decision-making is assessed, once
the presumption of capacity has been called into question.
A “functional test” is also used by notaries and others in determining whether a
person has the legal capacity to perform a particular transaction or legal act, such as
making a will or a contract, or consenting or refusing to consent to a medical
treatment.
Other terms for “functional capacity” are “competence”, “contractual capacity” and
“mental capacity” – the last term demonstrating its connection with discrimination
based on disability.
In all these cases, assessment of functioning is used to deprive a person of
autonomy. It is the deprivation of autonomy on this basis, rather than the
assessment of functioning in itself, that constitutes discrimination. Assessment of
functioning, or assessment of needs related to functional diversity, is necessary in
order to offer appropriate support and reasonable accommodations, so long as the
person does not object, to fulfill the right to legal capacity.
Standards for valid consent that depend on “independent” decision-making without
the assistance of others also discriminate based on disability. Such standards are
counter-productive, since they discourage people from seeking help they may need,
and discriminate against people with disabilities who often cannot hide their need
for assistance. Concerns about undue influence can be better addressed by
safeguards in relation to the use of support, as required by 12.3 and 12.4.
Support to Exercise Full Legal Capacity
Support to exercise legal capacity creates greater opportunities for a person to
exercise his or her own will, while substituted decision-making reduces such
opportunities. Instead of a binary system of self-sufficiency versus enforced
dependence, support allows people with a wide range of abilities to exercise selfdetermination as their legal right, within a matrix of community.
For support to work properly, it must be freely given and received, based on full and
equal legal capacity, that is, the legal right to make one’s own decisions unimpeded
by others, and the legal status of being a person who has this right. The person
using the support should have the right to withdraw from it if he/she so decides. If
support can be imposed by a court, or if a person can be ordered to have a codecision-maker, against his or her will, support is undermined by failing to follow its
own principle of respect for the will and preferences of the person (see 12.4). In
some situations it may not be possible to ascertain a person’s will regarding
support, and disputes may arise as to whether or not support persons are acting
according to the will of the person. Safeguards need to be developed to resolve such
disputes in a manner consistent with the full and equal legal capacity of persons
with disabilities, and with the principle of respect for individual autonomy including
the freedom to make one’s own choices (see Article 3).
An interactive process should always be used in providing support, and in
determining the type of support that a person will accept and find useful. Creative
and accessible communication needs to be used, along with reasonable
accommodation/modification of usual habits of interaction, in order to establish and
function within a support relationship.
Ideally support relationships will be ongoing, and people will establish such
relationships in anticipation of future times when they may need them. However,
support can also be provided for specific transactions or legal acts, in mainstream
settings so that people with disabilities can use the services of doctors, lawyers,
notaries, banks, etc. in ordinary ways if they prefer self-sufficiency or lack an
ongoing support relationship. Support in mainstream settings may be synonymous
with the requirements of accessible communication and reasonable
accommodation.
Remedies against Abuse and Exploitation
Remedies against abuse and exploitation are needed in relation to legal acts in
general (for example, strong patients’ rights enforcement of free and informed
consent in health care, consumer protection laws in business and finance, etc.) and
to prevent abuse by those holding themselves out as support persons. Such
remedies should uphold the social model of disability by focusing on environmental
factors (e.g. holding perpetrators accountable) rather than on the unique
“vulnerability” of people with disabilities.
Protective measures and practical support can be offered to people engaging in
risky behavior, but cannot be imposed on them. Involuntary protective measures
such as civil commitment, restraint and seclusion clearly violate the CRPD, and
people with disabilities must also be protected from coercion and intimidation of
any kind in services and programs.
Functional Capacity and Consent
“Functional capacity” has been traditionally invoked to limit a person’s liability for
decisions that have not been properly understood or appreciated. However, since it
is keyed to functional diversity, i.e. disability, such a standard is both over-inclusive
and under-inclusive. People may make decisions that are later regretted or that are
perceived by others as reckless or ill-informed, for many reasons. These may
include personal and cultural factors as well as vulnerabilities due to lack of
education or familiarity with local language and customs, extreme need,
inexperience, etc. On the other hand, for persons with disabilities, the problem is
not so much functional diversity at the individual level, but contextual and
environmental factors that create barriers to mutual understanding. With a
functional capacity standard, persons with disabilities are in effect placed under a
greater burden to justify their decisions, consequently their autonomy is not
respected on an equal basis with other persons.
Functional capacity is so embedded in our law of consent that it is difficult for many
to conceive of alternatives. However, alternatives must be utilized that safeguard
the decision-making process against abuse and exploitation, that support people to
understand and appreciate the nature of decisions to their own level of satisfaction,
and that allow nullification of decisions that are later regretted. Such safeguards
must be sensitive to functional diversity so as accommodate diverse needs, without
creating separate protective regimes that reinforce social perceptions of the unique
“incapacity” of persons with disabilities. Such safeguards also must be balanced
against the needs of all parties for some degree of legal certainty as to the finality of
decisions.
The development of such appropriate non-discriminatory safeguards should
diminish the reluctance of other parties to contract with persons with disabilities.
Anti-discrimination obligations can also be enforced in this regard, and positive
measures should be undertaken to raise awareness and provide training in
accessible communication and reasonable accommodation in the decision-making
process. (See Articles 8 and 4.1[i].)
The need for safeguards to protect against abuse and exploitation, and to ensure
that a person’s actual will and preferences are being respected, applies to decisions
about support and accommodation. Support and accommodation for the exercise of
legal capacity, just as in other areas (such as personal assistance with living in the
community, or accommodations in employment) is subject to the consent, or nonobjection, of the person concerned. This generates similar issues as consent in any
other context.
In some situations, support and accommodation of some kind will have to be
provided before it is possible to determine the person’s will and preferences of any
kind, particularly where communication barriers exist. Such support and
accommodations needed to establish communication and create a meaningful
opportunity for the person to accept or reject further support should be provided
without requiring prior consent. However, such support and accommodations
should be provided in such a way as to respect the person’s will and preferences
insofar as they are expressed at any time. This may require changing the personnel
who are attempting to provide support, changing the approach, allowing the
necessary time for a relationship to develop. It may also require respecting a
person’s clearly expressed wish to be left alone. Protection of the physical and
mental integrity of the person must also be given effect, so that, for example, certain
intrusive and irrevocable medical interventions such as sterilization, or the
administration of electroshock (electro-convulsive therapy) or neuroleptic drugs,
must be prohibited if there is doubt about the person’s expression of consent to
such procedures.
Resolution of disputes regarding the provision of support or a person’s refusal of
support, or about the operation of any safeguards, must be conducted in full
realization that persons with disabilities have an equal legal capacity with other
persons, and that in no sense can disability, functional diversity or any
circumstances related to disability or functional diversity justify a restriction of the
right to make decisions according to one’s own will and preferences.
Conclusion
It is hoped that with these comments we have clarified the view of the disability
community with regard to “functional capacity” and the implications of full and
equal capacity with support to exercise it according to one’s own will, as needed, for
all persons with disabilities.
Sincerely,